I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: cattlekid on June 08, 2011, 12:38:37 PM
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Wow - so I just got my monthly labs back from the clinc yesterday. Phos is down to 3.8 but calcium is up to 12.3. So they took me off my generic PhosLo and put me on Renvela as my phos binder. Yikes! $200 copay per month! I had a coupon from the SW that took it down to $50 per month but that's still way more expensive than the generic PhosLo.
Are there any alternatives I can suggest to my neph that wouldn't spike the calcium but be a little more cost-effective?
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The cheapest alternative we find is to get enough dialysis and the phosphorus will come down as a result. If you are on HD, do you know your HDP? Check my signature below. Many nephrologists don't seem to be able to suggest to patients about getting more dialysis - their answer always seem to be more expensive prescription drugs - and you wonder if they have any conflict of interests in the drug companies. Many nephrologists don't seem to be interested in generic or OTC supplement that can help reduce phosphorus either - such as slow niacin - "niacinamide and niacin inhibit intestinal transport of phosphorus and achieve clinically significant reductions in serum phosphate in patients undergoing dialysis."
http://ihatedialysis.com/forum/index.php?topic=21842.msg359812#msg359812
Niacin and Niacinamide for Hyperphosphatemia in Patients Undergoing Dialysis
phosphorus levels and parathyroid hormone levels fell in the NHHD group
The monthly dosage of slow niacin comes out to be about $5. Niacin will not completely replace phosphorus binders.
http://www.amazon.com/Slo-Niacin-Controlled-Release-Niacin-Tablets/dp/B000H208B2/ref=sr_1_2?ie=UTF8&qid=1307564717&sr=8-2
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Hello Greg,
Thanks for your reply. I am currently on incenter, 3x per week, 3.75 hours per treatment. I know that puts me low on the HDP list but I'm approved for transplant with four living donors currently being tested. I'm also switching centers to University of Wisconsin where the waitlist for my blood type is less than one year. So I do not want to muck about at this time with switching modalities to home hemo - even if I did home hemo, I would do NXStage and not nocturnal.
I'll ask about the slow niacin...although it still states that it needs to be taken in concert with another binder, but maybe I can drop the number of Renvela with each meal to stretch the month's prescription a bit.
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Genzyme offers a patient assistance program for Renvela, just do a yahoo search and you will get info. Even though it talks about about help for people with no insurance, there is frequently help for those on Medicare with Part D prescription coverage.
If Genzyme doesn't help you, there is another phosphorus binder for those who need to get away from the high calcium binders. It is called Fosrenol, made by Shire. It too is pricey but they also have a patient assistance program with info available on line.
Get with your dialysis unit's social worker. He/she should be knowledgeable as to what programs are out there to help you out. Did the social worker go beyond simply giving you the discount coupon?
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My copay (Cigna Medicare Part D) for a month's supply of Fosrenol is $78. It was around $55 when I took Renvela, but I've found Fosrenol to work better. I can be a bit more liberal with my food intake while maintaining a phos level of 3.2-3.5 and calcium 8.9-9.3. Plus, it's more convenient to chew than to take with fluids, especially when just eating a snack. I'm on incenter as well (4.25-4.5 hours).
Unfortunately, we're at the mercy of big pharma when they have long term patents and generics can't be offered. The main ingredient in Fosrenol - lanthanum carbonate - is Chinese "dirt."
Interesting about the niacin comment. A dialysis friend of mine introduced me to it quite a while back, but more for raising HDL levels (good cholesterol) than as a phos binder supplement. We were out for dinner at a spaghetti place and he gave me a pill to pop before dinner. Forgot to warn me about the massive warm flush that I was to feel! Since I never had a cholesterol problem, that was the only time a took it.
Wow - so I just got my monthly labs back from the clinc yesterday. Phos is down to 3.8 but calcium is up to 12.3. So they took me off my generic PhosLo and put me on Renvela as my phos binder. Yikes! $200 copay per month! I had a coupon from the SW that took it down to $50 per month but that's still way more expensive than the generic PhosLo.
Are there any alternatives I can suggest to my neph that wouldn't spike the calcium but be a little more cost-effective?
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I use niacinamide along with Renvela. It works quite well.
500 mg with breakfast and 250 mg with late afternoon snack or with dinner.
Ask your nephrologist about it.
8)
PS: I'm also on the Genzyme program called Renassist.
For people with Part D who earned less than about $30,000 in 2010.
They send you your prescription dose directly from their pharmacy, so it won't cause you to enter the donut hole.
Phone: 1.800.847.0069 (M – F, 8:30am – 5:00pm EST)
Very nice people on the phone.
http://www.renassist.com/~/media/Files/Renassist/Renassist_Insurance_Verification_Form_and_Patient_Assistance_Application.ashx
www.renassist.com
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Greg
I went to the site you mentioned and saw the formula 10ml/h/kg and the example of a 60kg person with a limit of 600ml.
Now, I'm in Australia and the most recent (yesterday!) advice from my HT (Home Training) clinic tells me that a UF rate of over 400 is excessive...we are trained (and try) to run our sessions so that is a reality, not always succeeding because we are only human after all, but generally that's what we do.
So...my weight is 108kg, the formula says no more than 1080ml per hour...but that's a rate that would not enter our minds.
I take your point on phosphates and and trying to move from 24 hours weekly to 28 or maybe 30, but am not sure that is enough. I use a combination of nocturnal and daily depending upon domestic and social needs.
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Thanks for the info - I have only private insurance right now (no Medicare) so I figure that using the discount coupon and going to $50 per month from $200 is not that bad. However, compared to the generic PhosLo that I *was* taking at $10 for 3 months, it's a shocker. I can get it cheaper through mail order pharmacy but I need to investigate if I can use the discount coupon through the mail order - that will bring the cost down to $14 per month which is definitely doable.
Genzyme offers a patient assistance program for Renvela, just do a yahoo search and you will get info. Even though it talks about about help for people with no insurance, there is frequently help for those on Medicare with Part D prescription coverage.
If Genzyme doesn't help you, there is another phosphorus binder for those who need to get away from the high calcium binders. It is called Fosrenol, made by Shire. It too is pricey but they also have a patient assistance program with info available on line.
Get with your dialysis unit's social worker. He/she should be knowledgeable as to what programs are out there to help you out. Did the social worker go beyond simply giving you the discount coupon?
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so glad this question came up. My phos has been staying at 10ish for months. I was wondering what I could do to help it.
Thanks!!
You guys are so knowledgeably about kidney things!!! Thank goodness for you!
xo,
R
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R - I'm a bit taken aback that you have allowed your phos level to stay so high for so long. It will take its toll. With all you have already experienced, bone disease doesn't need to be added to the list, especially when you can get the phos under control.
You don't need to answer on here, but please be honest with yourself - How compliant are you to the renal diet? Are you following any sort of dietary limitations for phosphorous intake? Are you taking prescribed binders with all your meals and snacks - at the right times?
Here's an idea - find someone from your clinic who is doing really well with the renal diet and keeping phos levels in line. See if (s)he will be your "sponsor," just like with AA, and have you call her when needing support! Or, maybe someone on IHD that you would feel comfortable with.
I realize how much you are counting on another transplant. But please, until it does happen, do all you can to take care of body. You're way too young to have to deal with complications of bone disease on top of everything else.
Just curious - are you itchy all the time?
so glad this question came up. My phos has been staying at 10ish for months. I was wondering what I could do to help it.
Thanks!!
You guys are so knowledgeably about kidney things!!! Thank goodness for you!
xo,
R
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Rachael - I actually agree with the essence of PatDown's response. That is a pretty high PO4 reading. Has your neph and/or unit dietician or someone actually flagged this? If it's been running so high for awhile this is a real concern for bone disease. Have you had your PTH monitored also? If that's running high also and untreated you could well suffer from secondaryparathyroidism (ie: leaching of calcium and phos from the bones) leading to brittle and easily broken bones.
Not trying to be alarming, but this stuff IS important to keep in check as the longer term consequences can be bad and this is something you need investigated by your neph. It may well not be a diet issue per se but something else, or you may just need diffferent or more binders with your meals.
Since you've asked what can you do I'd say a really great first step is flag this with your neph as a concern YOU have (though you'd think they'd have picked it up too!!) and/or your unit dietician.
When any of these core values is out of the range it upsets the delicate balance we all try and keep under D and it can be quite dangerous (eg: high K levels) in the short term, or in the longer term (eg: high PTH, Ca/PO4 etc). This is exactly the sort of reason regular bloods are taken.
I do urge you to discuss this with your neph and see what they say. They may well be comfortable with this level for other reasons unique to your situation, but at least if that's the case you'd know - and understanding is winning half the battle in my view.
:grouphug; :grouphug; :grouphug;
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Thank you IHD family for the heads up. How stupid of me to not realize this. My dialysis brain must not firing neurons very well. I just can't believe my neph hasn't caught this. I sent him an email and he is checking it out as we speak. Man I could just smack myself....just more proof we have to be our own advocates!!!
Love you guys!!
Oh, here are my lab values...
K 4.7
kt/V 2.32
Phos 2.4 (low)
Calcium 10.8
PTH 75.0
Hemoglobin 10.3
xo,
R